MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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ashlee12's picture
Replies 3
Last reply 10/21/2014 - 12:39pm
Replies by: arthurjedi007, Janner, Anonymous

So I have questions about melanoma that I'm not to sure about . How does it spread and how does it get into lymph nodes? Is it a by blood thing?? 

 

Also so I read its a fast spreading cancer... Does that mean it can spread in a week a year ?? 

i currently have stage 0 so I wanna know what can happen

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Jewel's picture
Replies 3
Last reply 10/21/2014 - 2:22pm
Replies by: Squash, Jewel, HopefulOne

Hi there,

   Here is a fast history. 3.7 nodular mole found on husbands left calf 11/2010. Recurrance in 9/2011 on calf, Complete Lymphnode Dissection of left groin 3/19 positive. All clear until 9/2014 Ct scan followed by full body Pet Scan. Showing hot spots in the External iliac nodes & the pop nodes on the knee. Surgery(s) for removal is scheduled for 11/6. Hoping to get back to his NED status. Our oncologist is talking about starting him on YERVOY/IPI. My husband is Braf positive. Catherine from Melanoma Intl tried to look for PD1 trials for us but the closest is 5 hrs away. Ok so here is the question. My husband feels that if he is declared NED after surgery, why put that stuff in his body until HE HAS too. We are way up in the Adirondacks where the nearest hospital is an hour each way. We do have a local health clinic that is open M-F till 4. Is there any Stage 4 people here that have only maintained that way thru surgery? Is my husband crazy?, or am I for wanting him to proceed with YERVOY even though the side effects scare me. Thoughts and experiences PLEASE!

 

Thank you,

Jewel

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Anonymous's picture
Anonymous
Replies 1
Last reply 10/21/2014 - 9:39am
Replies by: Janner

Can blood moles be melanoma? I was first diagnosed in 2003 and have been NED since my WLE. I required no other treatment. 

I have a blood mole that has been there for a few years but is changing. I can't get into derm until Friday. Freaking out a bit.  TIA 

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MattF's picture
Replies 5
Last reply 10/21/2014 - 12:18pm

Hey everyone

So I am currently on Xgeva injetins fo my bone mets.  And I just finished Yervoy.

 

Had TAF / MEK Jan - Jun (failed in June and i went downward fast) 

Ipi Aug - Sept 

2 rounds of radiation (brain spots and abdomin) over the summer.

 

Start Keytruda  on Wed 

 

Thinking this is the last treatment

 

pretty darn scared.

Matt

 

 

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Janet Lee's picture
Replies 2
Last reply 10/21/2014 - 2:14am
Replies by: JustMeInCA, Bubbles

It has been months since I've posted something about our roller-coaster ride with melanoma. My Don has had one issue after another since his diagnosis in January of 2013, Stage IV. He finally started on Merck's expanded access to Anti-PD1 in late June, and at this point after five infusions it appears that he is not responding to the treatment. The mets in his lower abdomen appear to be growing and causing even more problems.

It breaks my heart to see this beautiful man suffer so, and to see his robust, healthy 200+ pound body deteriorate to a skeletal 130 pounds. Dr. Hodi at Dana Farber is now saying no more PD1 until he feels stronger. He has been in so much pain for so long, I think it has just sapped too much out of him.

Don has now been in the hospital for one month. He had an epidural catheter placed so that he gets continuous pain medication directly into his spine instead of taking all those pills and being affected by the pain meds mentally. The theory is to get him out of pain so that he can regain some strength to continue treatments.

However, now the catheter is causing him pretty significant discomfort and he is once again in too much pain to move much. And after being bedridden for a month, there's not much strength there at all.

As always, we appreciate any feedback, common experiences, helpful anecdotes.

I started writing an email to our friends and relatives right after Don was diagnosed, more so I knew I what I said to whom. I later started posting on one of those "caring" websites. It occurred to me that some of you may be interested these updates, so I'll give you the link here:

https://www.mylifeline.org/donlee

Keep up the good fight everyone. Good night.

Janet Lee

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Girl52's picture
Replies 5
Last reply 10/21/2014 - 11:33am
Replies by: Janner, Linny, Girl52

Got message from sis tonight: surgeon says BIL's lymph nodes clear (nothing said about WLE tissue yet). Yay! What does it mean to have pathology of metastatic melanoma with clean nodes? What would staging be here? And if primary remains unknown, could this mean there's still something in there somewhere that could pop up? Does anyone know where further testing/treatment/watch-wait goes from here in a case like this? Does this depend on results of WLE (e.g., satellite lesions, in-transit, etc.)?  Thank you for any insight.

Sis-in-law of person just diagnosed with metastatic non-cutaneous melanoma

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ashlee12's picture
Replies 6
Last reply 10/21/2014 - 2:45am
Replies by: JustMeInCA, kathycmc, Janner, Carole K, Anonymous, Flameazalea

 

I'm very depressed I'm only 22. I'm getting married next year and my life is over. I have cancer and I feel as if I'm dying. I was checking for other moles tonight and I feel as tho I have about 4 others that look the same... All I do is cry I feel like this is it.  
Derm told me not on scale yet for melanoma

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Anonymous's picture
Anonymous
Replies 0

I am going to chat in a few minutes if anyone cares to join me..  Hope to see some of you there..

Love and Light

Carole K

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Anonymous's picture
Anonymous
Replies 3
Last reply 10/21/2014 - 12:10pm
Replies by: Anonymous, JustMeInCA

Hey there.

I'm a 24 year old male with blonde hair, blue eyes and fair skin. About 6 weeks or so ago, I noticed a small mole type thing on my crown/vertex of my scalp, that I'm pretty sure wasn't there before. I went to my GP who said it didn't look like anything dodgy, although it looked like there were two colours in it (it looked brown to me, though I was using mirrors and a camera to see it) so referred me to a dermatologist. The mole was smaller than a pencil eraser, you know, the ones that sit on the end of pencils. So less than about 5mm - though a form from the hospital today says something about 2mm, but I'm not sure if that's referring to the mole. So it may be smaller. My GP said the referral would be about 6 weeks.

I wasn't happy about the length of time so I later spoke to my GP, who then made it an urgent appointment.

A couple of days after my appointment, checking the mole again, it had turned black, almost like a scab.

Two weeks later I went to see a dermatologist who looked at it, said it looked like a blood blister, though she said blood blisters don't normally appear on the scalp, so then referred me to plastics to have it removed.

A few days later the mole which had gone to look like a scab, well, fell off. Underneath it was a paler version of the previous brown mole.

Couple of weeks later I go to plastics consultant who looks at the mole on my scalp, says he'd be very surprised if it was anything, check's my lymph nodes in my neck/below my jaw and says they seem fine, says he'll refer me to another hospital to have the mole removed, then sends me on my way.

I keep monitoring it and the size stays the same, still flat against my scalp.
I go today to get it removed, went smoothly, I think. I asked the surgeon whether it looked like anything and she said although there looked like there were two colours in the mole/lesion, its uniform. She cuts it out, tells me I'll receive a follow up letter in the post in the next 4-6 weeks. If the biopsy did show anything they'd call me up sooner.

So, now I'm home, I'm worrying. I keep reading stuff online how people get the results back, which are 'fine', then down the line something serious shows up. How common is that? Does it sound hopeful what the doctors etc. have said? And is that a normal wait time for the results, if it was anything serious?

Thanks.

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Steve2142's picture
Replies 4
Last reply 10/20/2014 - 6:04pm
Replies by: Ed Williams, Anonymous, Steve2142

I had metastatic melanoma in one lymph node in 2012 and had a complete lymph node dissection. I did not opt for interferon.  Have watched it closely and had annual pet scans and all has been good.  I just found two suspicious spots and had them biopsied and they are both new melanoma lesions that the Dr. believes are tied to the original melanoma from 2012.  One on my back was a 6.5mm non-ulcerated lesion and the other was a 4.9mm ulcerated lesion in my scalp above the ear. Going back for a pet scan and will probably need to discuss immunotherapy again.  My question is would this be considered "distant metastases" of the skin and therefore puts me at Stage IV?  Thank you.

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Hi :)

I have had a mole removed from the sole of my foot today. It was 4mm by 4mm in 2013, after a visit to my GP as it had ulcered & was weeping a clear fluid.

it grew from that to 7mm wide & 6mm high in 13mths.

My question is whether anyone has had a mole this size or bigger? That has evolved & grown so quickly (if that is quick?) & it ticks all the ABCDE criteria, but has come back benign? Or Dysplastic?...

Any advice greatfully recieved thank you! :)

Tori x

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uccio2014's picture
Replies 0

Hello all,

it is the first time i write here but i follow the site dialy.

Here my question:

there is someone under zelboraf for a long period?

any ned? and if so after how long? and for how long?

how did you detect it had stop to work?

Praying to go on  reading about all of you for years

Antonio

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RJoeyB's picture
Replies 5
Last reply 10/21/2014 - 12:39am

(Following up to my last radiation necrosis post a couple of weeks ago here:

 
This past week I had my scheduled three-month full-body PET/CT for continued monitoring but also to possibly be used as part of the continuing assessment in determining how to proceed on the question of radiation necrosis vs. tumor regrowth in my brain.  Physically, I think I've continued to improve slightly, perhaps starting to plateau over the last week.  I still need a cane to get around outside the house, but I'm mostly functional within limits again and we haven't had to increase the dexamethasone dose again.
 
The full-body portion of the PET was good.  No sign of any new metastatic disease elsewhere in the body.  The small lung met that was radiated (SBRT) in February didn't even make the radiologist's report and in reviewing the images, neither my radiation or medical oncologists can see it.  An area in my small bowel that's lit up on my past two scans (and periodically on prior scans over the years), but which we were pretty sure was transient GI inflammation near the site of my small bowel resection over three years ago, also didn't light at all.  A spot adjacent to the surgical site from May in my left tibia was noted in the report with a recommendation for follow-up with MRI, but recognizing that there was recent surgery and that the adjacency to the bone cement may make it challenging for MRI to differentiate.  Knowing my orthopedic oncologist (he's operated on me three times:  left humerus, femur, and tibia) and based on numerous prior conversations, the fact that this area is lighting up on PET likely won't be a concern — in the past he's said that there can be inflammation for 6-12 months after a bone surgery.  So we'll check in with him and it's possible he'll say to go ahead with the MRI, but I'm guessing not at this point, which I'm comfortable with.  We see him in a few weeks for a six-month post surgery follow-up anyway.  
 
(The only other items on the radiology report were cutaneous areas on my upper inner right thigh and bottom of my right foot and the only reason I note them here is to point out the finicky nature of PET:  both areas I told my wife the day before, "Don't be surprised if these light up on the PET."  The area near my groin is an infected pore or hair follicle, which I've been prone to since being on the steroid (reduced resistance to infection + increased sweating + weight gain + "chub rub").  And the bottom of my right foot has been a mess of blister, irritated, and dry skin since that leg and foot has been doing a lot of work with my messed up gait over the last couple of months.  The radiologist doesn't know any of these when reviewing the images, so they make the report, and then my medical oncologist has to "correlate".)
 
Which brings us to the big question, what about the radiation necrosis vs. tumor regrowth?  Of course, there is nothing close to an absolute answer without pathology, but both my radiation oncologist and neurosurgeon were influenced sufficiently to think we should continue down the path of this being RN.  First, while the PET isn't all too helpful in looking for brain metastases (remembering of course that the brain already lights pretty brightly on PET making tumor difficult to discern from normal activity), the fact that there was nothing so bright to stand out at all, indicating something more significant, is something they wanted to see.  My radiation oncologist also requested that radiology perform an "image fusion" of my brain MRI from two weeks prior with the brain portion of the PET/CT, and that fused image didn't show anything that stood out either.  Finally, while the steroid would treat either RN or tumor, they are encouraged that I've seen motor control improvement with the steroid.  The plan then is to continue for now managing this as RN with close monitoring, meaning another MRI in probably about a month.  In the meantime, we'll stay at the current steroid dose unless symptoms again worsen.  The goal of the steroid won't be to completely resolve the motor control symptoms (and it doesn't treat the underlying necrosis at all), only to keep me functional while minimizing the long-term dangers of prolonged steroid usage.  I'm told and have read that more often than not, RN can resolve on its own over time, so for now, the approach they want to take is to balance motor control issues with steroid effects and closely monitor as this plays out over the coming few months.  Other options were discussed, including Avastin, surgery, and I brought up hyperbaric oxygen therapy (HBOT), but the consensus is that we're not there yet with any of those.  Any changes on scans or symptomatically would put anything back on the table, of course.
 
It's as frustrating as it sounds, but I'm trying to be patient and live with the continued ambiguity, both skills I've had to work on over these past few years.  More to follow soon, thanks for reading.
 
Best,
Joe
 
 

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Emcjones1's picture
Replies 9
Last reply 10/20/2014 - 2:07pm

I am 4 weeks post initial diagnosis, and 3 weeks post WLE and SLNB. Pathology identified micrometastases in two nodes. Can anyone else in a similar situation tell me how long their oncologist waited to do PET or CT scans?

I am a 50 year old female biomedical scientist with stage 3a melanoma.

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_Paul_'s picture
Replies 17
Last reply 10/20/2014 - 7:50am
Replies by: Anonymous, Bubbles, kylez, _Paul_, Janner

Hi Everybody,

I haven't posted here for quite a while. But it looks like I am back! I reluctantly joined the stage 4 club last month, a little over two years from my initial diagnosis.

My oncologist suggested I embark on a cliniical trial which combines the standard of care, ipi, with irradiation of one of my tumors. The hope being that my immune system will recognize some of the matter from the tumor as antigenic, and combined with the ipi will produce a higher response rate than if the ipi was used alone.

We also talked about nivolumab, since it just got approved by the FDA and has a higher response rate than ipi. But the FDA has approved nivo only for when the ipi has failed. That sounded backwards to me, since it would seem like you should try the drug with the best probability of response first and then move down the line.

So then I got my first insurance statement from the ipi which came in at over $40k! I have never been much of a conspiracy theorist, but given the fact that Bristol-Myers Squibb makes both ipi and nivo, and that the nivo will likely cost the same or more than the ipi, it sure seems suspicious!

I talked to my Dr. about getting the nivo first, and he said that would be an "off-label" use of the drug and not covered by insurance.

Any thoughts on why I have to try (and fail) the ipi before I can try the nivo?

Thanks! - Paul.

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